Test result history and meds

[Coachgeorge]

At the suggestion of a forum member,I've spent a couple of days trying to figure out how to post my history. It's difficult with the fonts and sizes so I'm trying to put it in a post. I'm hoping the screenshot works. I'm not doing well so I obviously need help. These are my results and meds to the best of my recollection. I was showing a little improvement up until about 4 days ago. I'm wondering if I'm taking too much levo as my T4 is beginning to rise again. I will say that I do better in the afternoon and evenings on some days. thank you

[Lalatoot]

It works as I can read it fine. Lot to read before commenting.

[Coachgeorge in reply to Lalatoot]

Thank you for letting me know!!! It took a lot of effort. I’m not very tech savvy

[Lalatoot]

I usually look at Ft3 first. Your result is barely mid range. Many need it well towards the top of the range to feel well. It has never been up at the 70% or 80%through the range. Could this be something?

[Coachgeorge in reply to Lalatoot]

You’re right it’s always been 70-80%. It worked for me when I was on 100mcg of levo. Then I got sick and lost 45 pounds. That’s when my T4 jumped. Right now, I feel so shaky that I can barely function. But the crazy part is that I can fall asleep sitting up even with the jitters.

[Lalatoot in reply to Coachgeorge]

Keep strong. Think back to the other week when you managed to spend time with your family. Things will improve.

[Coachgeorge in reply to Lalatoot]

I’m just wondering if I need to be somewhere between 50-75 mcg of levo. I don’t think 50 is enough but 75 might be too much. I’m also wondering if the quick weight loss is the reason I don’t need as much. I’m also off blood pressure meds.

[Lalatoot in reply to Coachgeorge]

Trust your instinct. Give it a try. We get to a stage when we can't feel any worse!

[7eleven in reply to Coachgeorge]

A private Doctor worked out how much she thought I needed over a week and I take a slightly different dose each day eg 50mcg levo one day, 75mcg levo next day, 75mcg novothyral the next etc.

Maybe you could try something like that?

[Coachgeorge in reply to 7eleven]

That is a great suggestion. Thank you

[Teresamarie in reply to 7eleven]

That’s what I do but for 75 and 88.

[SilverAvocado]

Coachgeorge, I'm afraid I read on a phone screen and this is impossible to see! The whole table of results is about 2 inches wide!

I always say to people that by far the best way to present your results is to type it onto the forum. That way it will be visible to everyone. Any form of picture will always make it difficult to read. Only use pictures if there is something graphic to add to the results, like a cortisol saliva graph.

In your case, as you have already done the typing, so you've done the hard but. Usually people post pictures because they want to avoid typing out their results. Just cut and paste those results onto the forum, and adjust any formatting so they are nice and clear.

[Coachgeorge in reply to SilverAvocado]

I put these in and I'm hoping it works. I'm still very sick and approaching 10 months in bed. However, there were a few bright spots. I was able to go see my children in early August. It was a struggle and I was in bed some but I made it. Up until a week ago, I thought I was improving. Then, last Friday, I was back in bed. The 50/5 wasn't getting it done. the 75/5 was helping for about three weeks. I'm hot, cold, shaky, constipated, weak, etc. I know I'm hypo but I think since my T4 is rising again, I'm back to showing hyper symptoms. I really am at a loss and have no clue what to do. All vitamins are great with the exception of ferritin which is in low range. 83 range is 18-204

DATE T4, range TSH range T3, range MEDS mcg

0.80 - 1.80 .4-4.5 2.3-4.2 T4/T3

8/10/17 1.75 2.4 100/NA

7/17/18 1.59 1.980 2.8 100/NA

7/29/18 1.240 100/NA

11/6/18 1.98 2.020 100/NA

1/31/19 1.69 2.16 100/NA

5/20/19 2.24 1.43 100-6 days /NA

6/10/19 2.03 1.84 2.6 75/NA

7/5/19 2.39 2.070 2.8 75/NA

7/30/19 1.32 4.49 3.2 50/5

8/24/19 1.19 4.84 2.9 (8/29/19) 50/5

9/23/19 1.70 1.29 3.1 75/5

[SilverAvocado in reply to Coachgeorge]

Coachgeorge,

The first thing I see is that your TSH has been fairly high the whole time. Once on thyroid hormone most of us will feel well with a TSH of 1 or below. Often we need it well below.

You probably already know this, but TSH stands for Thyroid Stimulating Hormone, it's a chemical messenger telling the thyroid to make more hormone. It raises when thyroid hormone is low. Doctors tend to rely on this far too much, and once you are tuning up to your optimal dose it is pretty useless. But the one thing is can tell is is if we're very hypothyroid or seriously undermedicated. So my first thought here is that you've been undermedicated the whole time.

Looking at freeT4, which shows us how much available T4 is in your blood, this has also been very low most of the time. Strangely it has been in quite good shape over the Summer, getting close to the top of the range. Looking at your dosages at that time this is hard to understand, because you were taking the lowest dose of T4 and lowest overall dose at that time. In your most recent bloods in September it then drops back to a more consistent level.

Something was going on at that time. Possibly these tests weren't taken correctly and you bad taken your pills before the test. Ideally you need a 24hour gap between taking T4 and having the test. It could also be that you had a Hashi's flare at the time and its true that your hormone was raised. Did you feel a lot better during that time? That's what we'd expect if these results are a true reflection, because both freeT4 and freeT3 are much better during this time.

Looking at the dates for these results it's clear that several haven't been taken correctly, because there are gaps of less than 6 weeks before new doses. To get the most accurate test, stay stable on one dose for 6 weeks, then take your T4 24 hours before the test and T3 8-12 hours before. This can mean you have to do some juggling the day before. Then have the earliest blood test you can, fast over night and have only water before the test. You can take your pills straight after the blood draw, then you can eat breakfast an hour after that. If you don't stick to all of this, then your blood test may be very misleading.

In terms of freeT4, turn taking T4-only it needs to be high in range. Once you're taking some T3 it isn't as important.

Turning to your freeT3 results, these have also been low the whole time. For most of the two years this has been absolutely scraping the bottom of the range, which explains why you've felt so dreadful. T3 is the active hormone, and is required by every cell and organ in your body, and most closely reflects symptoms.

It has started to raise a little with your recent increase, and that is good, you need to keep moving in that direction. Most people will need a high in range freeT3 to feel well, at least a third up the range, but maybe all the way to the top

Continued in a new post...

[SilverAvocado in reply to SilverAvocado]

Now to turn to how you've been treated. I think this has been pretty despicable. You were initially kept on 100mcg, a pretty low dose by every measure, for over a year. Even though every single blood test in that time shows you need a raise.

Then in June of this year you were decreased. There is absolutely no reason on your blood tests for that decrease, the blood tests leading up to it all scream that you're very undermedicated. You are not even one of those people who is unlucky and their TSH drops low even though their hormone is low. You've got a clearly raised TSH at this point! No healthy person would have that high TSH.

The only lucky break is when you got some T3 in July. The dosage is still lower than the old 100mcg dose, but it is a start. And the most recent dose is finally the first dose increase you've had in the whole two years! Which I find really disgusting! You should have been given increases after every single one of these blood tests.

My advice to you would be to continue that raising. After the recent blood test I hope you got a new raise of 25mcg of T4 or 5mcg of T3. Then stick on that and get a blood test in 6 weeks, make sure you do everything for the test correctly. I expect you will need a few raises like that to get you where you need to be, but everyone is different.

I would also advise getting rid of the doctor who has kept you needlessly sick for two years! I think you're in the US and I do wonder if it would be possible to sue this doctor, especially as you've been so disabled. This may be the most clear cut case I've ever seen of negligence. Your blood tests are so very clear, every result is clearly wrong, and absolutely nothing was done to adjust your dose for so long! Some doctors do at least mess about a bit even if they make poor choices, yours just left you in distress.

[Coachgeorge in reply to SilverAvocado]

I just saw the rest of your response. Thank you. I was seeing an internist with a specialty in thryoid. Yesterday, she referred me to an endo. Looks like I'll have to wait 7-10 days before I even know if they will see me. I have been disabled. I took an early retirement as I'm not able to function. I was on the 100 mcg for years and had no problems. It went bad in November with the spike of T4. I am praying that the endo will see me. I appreciate the information. I'd bet he agrees with you. I just need to get on with it.

[Coachgeorge in reply to SilverAvocado]

Thank you for the detailed response. I take my meds as recommended the same way with every draw. It makes sense that T4 needs to be in the high range but when I get in that range, my symptoms are worse. I was improving until my T4 went to 1.70. I'm getting the hyper symptoms again. It seems to have started in November of 2018 when I was at 1.98. Then, I got sick in January and lost a lot of weight. She didn't check my thyroid again until spring and t4 was out of range. My blood pressue was very high and I was held in the office on clonidine for an hour until it returned to a safe level. She put me on antidepressants, which made me worse. I also had to take Ativan because the shakes and anxiety were awful.I'm sitting here so weak but my heart feels like it it pounding and I have alot of nausea. My arms are burning, like pins and needles and hot blood. This happens every time I get in the upper range for T4. If I take more T4, will the symptoms get worse? I'm feeling so hopeless.

[SilverAvocado in reply to Coachgeorge]

It's impossible that you could have been overmedicated at any point, because these results are all very very low. Sometimes undermedication can give these overmedicated symptoms. This is often due to the adrenals. Have you had a 24hour adrenal saliva test and looked into that? It is a bit of a rabbit hole to go down, but worth look ing at given your symptoms. Because you've had some unexpected symptoms it is possible there is a larger adrenal problem so definitely worth looking into.

It is possible that you feel uncomfortable with a high freeT4, this is unusual but comes up sometimes on the forum. The highest freeT4 you've ever had was in July and August of this year. Did you feel especially rubbish then? I am a bit suspicious of those blood tests, so it won't necessarily match up.

It is completely fine to go with no T4 and take T3-only, or to keep your freeT4 where it is right now and increase T3 to get you where you need to be. The goal, in terms of blood tests, should be to get your freeT3 high in range.

I would also work hard on the vitamins, and look into adrenals.

You've had a very unusual history. It's very surprising you were well for over a year with such low looking results. As you've retired I'm guessing you are not in your 20s, so it's not just pure energy and vigor that got you through! It's possible there is something a bit strange going on here.

I like to be systematic with things, so I think the first thing to try is the standard thing. Get your freeT3 looking good, vitamins looking good, adrenals looking good and see how you feel. If you try that and run into problems or still feel ill then that's the time to try to figure out the next thing.

It may be that the 2018 of such a low dose was just a bit of an anomaly and it was storing up problems that you're suffering for now. Or it may be that you will need a very low of strange thyroid status to feel well. At this point it's just a big puzzle.

I do wonder if maybe it would be a good idea to make a new post just about that puzzle. You felt fine a year ago on a very low dose, and now you've become ill with it. You may get some knowledgeable people on that particular situation popping up.

[Coachgeorge in reply to SilverAvocado]

Thank you. I retyped the results but didn't add that I felt well on just 100 mcg. I'm sorry I caused such a problem. I do appreciate your help.

[Coachgeorge in reply to SilverAvocado]

I hand typed it in with columns but it didn't come out that way. I hope you can read it. Sorry

[SilverAvocado in reply to Coachgeorge]

Well done Coachgeorge! I actually think it is quite readable like this!

I will have a read and tell you what I think.

[Coachgeorge in reply to SilverAvocado]

Good to hear. It looks Greek to me.

[SilverAvocado in reply to SilverAvocado]

After trying to use this lest of tests I've changed my mind. It is almost impossible to read. You've got a lot of missing values in the table, and you've just left them as blank spaces, so that in this version it is impossible to tell whether a given result is freeT3 or freeT4.

I have gone far out of my way to help you because I already told you off once and I know you from your previous posts

But I think in future you must present your blood tests in a way that is easier to read for the people helping you. This is in your own interests, because a lot of the time you just won't get any advice if you present it illegibly. Many posts about results get 30 replies, but I don't think this one will!! Keep going back into the post and editing it until you can see it is easy to read.

Presenting this large number of results is always v difficult. You have to use some creativity often to type it out clearly. For example maybe you could have made a column of freeT3 results and dates something like this:

FreeT3 (2.3-4.2)

Dose 100mcg of T4

8/10/17: 2.4

7/17/18: 1 2.8

Dose: 75mcg of T4

6/10/19: 2.6

7/5/19: 2.8

I think the easiest way to read results is to include each thyroid panel as it's own little list:

8/10/17 - 100mcg of T4

TSH: 1.75 (0.8-1.8)

FreeT4: N/A

FreeT3: 2.4 (2.3-4.2)

7/17/18 - 100mcg of T4

TSH: 1.59 (0.8-1.8

FreeT4: 1.980 (0.4-4.5)

FreeT3: 2.8 (2.3-4.2)

These are just a couple of suggestions. Another possibility would have been to cut down the number of results you show to just the most important ones. You can always add the rest as a comment inside the post if you feel it's needed.

Just put yourself into the head of the person who is taking their time to help you, and make it as easy as possible for them to see every number you show.

[Coachgeorge in reply to SilverAvocado]

I appreciate it. I've tried several times to get it right with no success. I'll try again. I am very grateful. Let me give it another shot with your suggestions. Thank you so much

[humanbean]

Having read what I can of your results, I suspect what your doctor has been doing is aiming to keep your TSH in the middle of the range. Lots of doctors do this. They are making the assumption that healthy people with healthy thyroids have a TSH in the middle of the range. And it isn't true! The distribution of TSH is highly skewed with the majority of results clustering well below the middle of the range.

For information on where TSH lies in people with no known thyroid disease, see this post :

healthunlocked.com/thyroidu...

Males in their 60s with no known thyroid disease have a median (average) TSH of 1.5 according to the data presented in that thread. The mode (the most common result) is 1.25. And people with hypothyroidism need a TSH lower than that of healthy people in order to have a hope of feeling well.

[Coachgeorge in reply to humanbean]

Thank you. I need hope somewhere.